I am completely overwhelmed…I had posterior decompression and fusion surgery last April (April 11th), and have been pretty much half a person since. The surgery helped with the pressure in my head, and my arm and legs have significant more feeling in them. So, I can’t say the surgery wasn’t a positive thing. However, when they repositioned my spine and skull, they put the angle at 154.1 degrees, bc I had the highest neurological feedback at this angle. Prior to surgery this angle was 131 degrees (“normal” is 145), and now my head juts forward, which is fine aesthitically, but causes my muscles to be pulled and I have constant spasms. To the touch my neck feels like hard, and as if piano wire was running through it. This causes many headaches, swelling, and PAIN! Also I carry myself awkwardly and as time passes my whole back seems to be getting these feelings, not just my neck. I have been proactive and am trying acupuncture, i do physical therapy, massage, heat and muscles relaxers. But, it doesn’t end there, recently I found out that my blood work is a mess. I see a hematologist for separate (although maybe not that separate) issues, blood clotting and celiac. I just found out that I am completely iron deficient and have hemolytic anemic. I Am always on the low end of normal to being anemic in both, but I am “dangerously” low now. I am taking iron pills, and going back next month with the possibility of fusions. I read that the muscle relaxers shouldn’t be taken if you have anemia, but they seem to be the only thing that offers mild relief. My surgeon said he can go back in and adjust the angles of my rods in my neck, which will help with the pulling of the muscles. But I am scared to go back in for more surgery, but this is no way to live. I am nearing the end of my rope, I know it can always be worse, but I really don’t want it to be. What would you do??
Jules, I can see why you are stuck. Have you tried PT yet? Also, talk to your doc about taking a magnesium supplement and or applying magnesium oil to your neck. It is a natural muscle relaxer and a lot of us have had luck with it. Is your vitamin D level normal? If not taking a supplement can help, surprisingly, with pain too. I know these suggestions aren’t “big guns” but maybe can help in the interim while you get your blood work where it needs to be. When one thing is off the whole harmony can be disrupted. I would keep your options for surgery open but get your deficiencies back up to normal levels first just in case it helps with your symptoms.
Sorry you are in so much pain Jules 
Jenn
I have been in PT since may, and I ordered some magnesium oil. I am willing to try anything!! Thank you! My vitamin d level is on the low side, but I take vitamins, they started me on a few after surgery. Vitamin d, b, and a multivitamin. I have also had to take stomach medicine bc I got an ulcer from taking all the other pills. It never seems to let up…I’m sorry to complain, just feel trapped in my own body. Scared to go through a surgery and recovery again, but this is too much!
Thanks for listening!
Thank you Mandy! I brought up what you suggested to my physical therapist, and he is looking into it. I am willing to try and do anything. I watched the video and read the website, it is very interesting. Sort of feel like I can be a doctor after everything I have read, seen and learned this past year.
Thank you again
Yes, I do
I went to the chiari institute in Long Island…I had dr. Rekate and dr. Insigna for my surgery, and saw dr. Kula before. I am pretty sure they know about eds too, I usually brought my mom or aunt on my appt, bc a lot get said and I often feel overwhelmed. I have heard dysautonmia, but not too sure what it is or if I have it, just that it’s been said. The doctors say a lot, but are really very helpful and understanding. Especially Dr. Insigna, he had been very supportive.
How long have you had Celiac disease? If you were just diagnosed then you may need time for your intestines to heal before you can start absorbing vitamins again. When I was diagnosed all my vitamin levels were very low and I wasn't absorbing anything from food or supplements. After a few months of being strictly gluten free my intestines healed and I could absorb things again!
I was diagnosed with celiac 5 and a half years ago…I’ve had issues with vitamin and blood levels here and there since. I am very good about gluten free, it’s gotten way easier over time and I don’t think about it as much anymore.
Thank you very much Beeba! I have a wonderful support with my friends and family, who I appreciate, but they can’t (thankfully) really understand. It’s like a rock and a hard place, and I appreciate everyone’s help on here!
Thank you so much for a little on your story, it helps a lot. I feel like it’s been such a. Whirlwind. I was diagnosed and within 3 months was being operated, and haven’t really caught my breath since. I kept thinking something must be wrong with me, bc I wasn’t getting totally better. I have felt crazy, and sad. So, it’s so helpful to know I am not alone In a truer sense, others feel as close to the same as me. I’ll keep you updates with what I do, and thanks for being here.